A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Main menu

Monthly Archives: October 2012

I wish I could take more credit. Last week I enjoyed a drink with a former work colleague, a mother of three young boys, who does not know that Martin has autism. She and her husband are both lawyers, full-time. (I don’t know how they do it.) She was complaining that none of their kids can fall asleep alone; her husband stays with the older two, while she falls asleep, and usually spends the entire night, in the youngest’s bed. Does Martin fall asleep by himself? she asked. Yes, I responded. I can put him in bed and leave. “You are so lucky!” my former colleague said. She’s right: I am lucky. Still, I wanted to say, “Yes, he falls asleep by himself, but he also has autism, and curing his autism has taken over my life. Would you choose that deal?” I wanted to take credit for doing more than standard mom tasks, especially since my conversation partner works while I don’t, and has three kids to my one. Instead, I let her think I have it easy.

2.

When I hear about other ASD kids making more progress, or faster progress, than Martin, it gives me hope. It also makes me angry and resentful. Why not our turn? Why not yet? What more do I have to do?

3.

I suspect that some of the interventions we do are just so much hocus-pocus.

4.

I am angry that we “did everything right” and Martin still has autism. While I was pregnant with Martin I avoided alcohol, watched my protein and nutrient intake, chose organic foods, refused to get my hair highlighted, had Adrian clean the cats’ litter boxes, exercised without jostling my belly, and got ample rest. (The good old days.) I breastfed Martin for six months exclusively, and 21 months total. We soothed him by the Happiest Baby method, ensured a proper sleep environment, read to him, played with him, coddled him. When I see a parent on the subway, at midnight, unjustifiably yelling at toddlers who are clutching Doritos and Mountain Dew, I think, “Really? You get the neurotypical kids, while mine has autism? That’s fair.” I try to redirect that ugly thought by remembering that, however unfair my lot feels, those sleep-deprived, junk-food-fueled kids have it worse. And thank goodness they don’t have autism added to their burdens. The redirection succeeds, but I can’t deny that the initial thought happens.

5.

I become impatient with Martin over behaviors that I want him to control, even though I know they are symptoms of his ASD and not in any way his “fault.” Skipping. Chewing on a straw in the corner of his mouth. Letting himself fall slack. Taking 20 minutes to manage any task, even to pull up his pants after using the toilet. Worst, I get annoyed when he doesn’t pay attention to what I’m saying, or to what he’s doing, or to what’s going on around him. I know I shouldn’t. I try hard not to. Most of the time I can stop myself. When I can’t, I console myself by remembering that plenty parents of neurotypical four-year-olds lose patience because their children are acting like—four-year-olds.

6.

I have doubts about whether we’ll get there. I have them often.

7.

I love the BeeGees, the Doobie Brothers, Peter Gabriel, and Edith Piaf. That’s not related to Martin’s autism. It’s just kind of quirky.

Last Tuesday I heard him crying at 10:40 p.m. Crying usually signals a nightmare or some other fright, and such was the case. He had fallen out of bed. He was plopped on the hardwood floor, clutching his stuffed elephant, confused. I lifted him back into bed, checked for damage, reassured him while rubbing his back, then returned to the kitchen as he dozed back off.

This Tuesday he woke me by calling “Mommy! Mommy!” at 1:10 a.m., from his bed. That’s a worse sign; calling for me indicates that Martin is fully awake, and going to be up for a while. I went to his room and said, “Martin! It’s still nighttime. Go back to sleep until morning.”

“I want you to get in my bed,” Martin replied.

“No. I’m going to sit outside your door. You go back to sleep.”

“I want you to sit in the rocking chair,” Martin said. The rocking chair is in his room.

“No. But I’ll be right out here,” I said and exited his room, leaving the door ajar. I stepped into my and Adrian’s room—our door is only four feet from Martin’s, across a small landing—to retrieve my iPad.

Martin started to cry. “Mommy! Mommy! I want you to come inside.”

“Martin!” I said from just outside his door as I powered up the iPad. “You’re fine. I’m right here. Go back to sleep.”

He cried a little more, called, “Mommy! Mommy!”, and fell silent.

I sat down and scrolled through my friends’ Facebook statuses. Since I’d also done that right before I fell asleep 90 minutes earlier, there wasn’t much to read.

Martin started up again. “Ah, Mommy! Ah, Mommy!”

“Martin! Don’t be silly. It’s sleepy-time. Sleep.” I closed Facebook and called up a Scrabble game I had in progress against “CPU.” CPU was beating me by 95 points.

Ten minutes passed. I shut off the iPad, to gauge whether Martin would react when the glow disappeared from outside his door. Nothing. I waited another couple minutes, then quietly rose and returned to bed. It was around 1:30 a.m. I fell asleep.

“Mommy! Mommy!”

2:02 a.m. He was at it again. I stayed in bed and called, “Martin, it’s sleepy-time. Sleepy-time!” Next to me Adrian groaned and flipped onto his stomach.

“Ah, Mommy!”

“Martin, stop it! Go to sleep.”

Silence, then sudden crying. Martin was going to push the point. I got back up, grabbed the iPad again, and returned to my perch outside Martin’s still-ajar door. “I’m sitting right here,” I said. “Sleepy-time.”

Martin stopped crying and started chatting to himself: “You’re right there. Mommy is sitting right there. Mommy is right there.”

No new Facebook status updates. More Scrabble for me. Big defeat to CPU. I’ve got to stop setting the Scrabble difficulty level to hard, at least when I’m playing half-asleep. I shut the iPad off and listened for a reaction from Martin. Nothing. I snuck back to bed and dozed off.

“Mommy! Ah, Mommy!”

2:54 a.m. Martin was still awake. I called to him from my bed, eliciting more rumblings from Adrian. This time Martin didn’t push the point. Without crying, he said, “You’re right there.”

“Yes. I’m right here.” I didn’t leave my bed. I fell back to sleep.

Martin woke me at least twice more; the last time I recall was around 3:40 a.m. Each time I was able to quiet him without getting up again. Finally I heard no more from Martin, and I slept until my 6:00 a.m. alarm.

I estimate that, in total, Martin was probably awake for three hours. I entered his room just once. About 40 minutes of the three hours I spent crouched outside his door with my iPad. The remainder of the period I slept, albeit with interruptions.

I would not describe this as a good night. Not by any means. But it is progress. We aren’t so far from the time when Martin routinely woke for three-, four-, and even five-hour stretches during the night, and either Adrian or I had to be in his room every minute until he returned to sleep. Sure, he was up this Tuesday night, but (1) it was an unusual occurrence, (2) for the most part he stayed alone, and (3) eventually he got himself back to sleep.

Sure, I had to be up, too, and my calling out from our bed bothered Adrian. But for the most part, I remained horizontal, in my own bed. Anyone who suffers chronic lack of sleep will tell you—horizontal rocks.

Recently it has been suggested to us—and I’m not going to name any names here, not going to disclose who could have made such a detestable suggestion—that Martin might heal better if we were to move to the suburbs.

We are not suburban people. We are a city family. We pay top dollar for overcrowding, grime, shouting, car horns, and traffic. In exchange, we enjoy multi-ethnic and multi-generational neighbors, quality restaurants, every life necessity within a five-minute walk, the Met, museums, theaters, and a ZIP code where Wal-Mart is not welcome.

It’s not that I look down on my friends in the suburbs. They have vegetable gardens and swing sets and garages. Entire garages all to themselves! It’s like they own weekend houses for every day of the week. But it’s not for us.

Right now I do wish we owned a weekend house, some retreat somewhere. That might put an end to this “move to the suburbs” talk.

Alas, we don’t. We’ve never wanted anything more than our apartment, never felt we would even consider leaving the city.

Will we consider it now? Yes.

Would we actually move? That’s another question.

My initial reaction to the suburbs suggestion was no. That’s it. That’s the line I will not cross. That’s the thing I will not do.

My second reaction to the suburbs suggestion was skepticism. How could that be necessary? Is the urban jungle so bad? I feel fine. Adrian feels fine. The parks are full of healthy kids.

Yet I am not blind. I’ve had my suspicions. I saw how well Martin did when we rented an isolated house in Maine this summer. Autism is now widely regarded as linked to an underlying immune disorder, and persons on the spectrum react poorly to radio frequencies, air pollution, electromagnetic fields, excessive stimuli. We have noisy, dirty construction sites on three sides of our building. Let’s face it: In a city-suburb face-off to produce the most air pollution and radio frequencies, the city would kick some suburb butt.

My third reaction to the suburbs suggestion was trepidation. What if we tried moving, and it helped? What if we had to stay in the suburbs? What if we—liked it?

That’s about when my angry, cynical side chimed in. The suburbs, with their chemical-laden golf courses and manicured lawns? The suburbs, where home lots abut power plants and electric lines? That will help Martin heal?

Adrian and I are wrestling now with the whole suburbs idea. Autism-warrior-me is wrestling with angry-cynical-me. We’re all exploring alternatives. A short-term relocation or other trial run. Making our apartment as safe as possible.

In some ways it comes down to identity. I identify myself as a city person. We’ve changed so much already. I’ve quit my job and given up most of my volunteer work to focus on Martin instead.

But I didn’t work my way through college and law school to become a suburban housewife.

When people ask me what treatment “helps Martin most,” I shrug and say, “Dunno. Some combination of what we’re doing, I guess.”

We’ve dragged ourselves through a rough couple months lately. Symptomatic, crabby, stagnated months. Regression. Over the last eight days Martin has improved, and I am praying the road is becoming firm again.

I ask myself, and others have asked me, what provoked this latest months-long slog. My first thought is, “Dunno,” followed by, “Viruses seem to be an issue. Also chronic internal inflammation. Unavoidable radio waves. Adrenal stress. Something environmental? The construction happening directly north, east, and south of our apartment right now? Our own bathroom renovations? Parasites, maybe. Or electromagnetic fields. Or an issue at school,” followed by, “Oh, hell. I dunno.”

Nevertheless, I have two recent incidents that either (1) put the lie to unmitigated “I dunnos,” or (2) demonstrate that I retain an active imagination.

Incident One: Evil Metal Detector?

Two weeks ago we traveled to Chicago for doctor appointments. Over the course of the three-day trip Martin’s symptoms ameliorated, somewhat, and by the time we arrived at O’Hare for an evening flight home, he was able to hold my hand and wait in the security line—without dancing, skipping, wresting his little wrist from my grip, wandering away, or staging a meltdown. He was doing well.

When we arrived at the front of the line, I asked the TSA agent on duty whether I could request that my son be hand-searched, or at least scanned with a security wand, instead of walking through the metal detector. He has a neurological condition, I explained, and I prefer not to expose him to the magnetic field.

The agent seemed bemused by my request but responded helpfully. Because they aren’t allowed to touch children under age 12, she said, my request would require calling a supervisor from another part of the airport. Fifteen or 20 minutes might elapse before he arrived. Should she summon him?

I hesitated. We had half an hour until boarding time, but who knows what “15 or 20 minutes” really means, and I still had to clear security myself (Martin’s drops and pills being hand-searched while I argue/bargain with agents, flashing prescriptions for special foods and liquids in larger-than-three-ounce containers), then move Martin a quarter-mile to the gate.

“It’s okay,” I said. “He can pass the metal detector.”

But it was not okay. Immediately after walking though the metal detector, Martin became unmanageable. He refused to sit while I completed the security check, ran away from the security area despite admonishments, and whined nonstop. When we tried walking to the gate, he could not hold my hand or focus enough to progress more than 20 feet without crying. The flight was delayed (and why would it not be, at a moment like that?), so I took Martin to the Admirals’ Club family lounge, where he spent 90 minutes alternately running circles around the room and collapsing on the floor. After half an hour I retreated into my own world, drinking wine and texting friends for support. Quality parenting, I know. I should mention that the family lounge has glass walls, so dozens of business travelers in the next room witnessed our mother-and-son performance, albeit without sound.

Why did Martin’s behavior change so radically when he passed through the metal detector? Did the magnetic field affect him, or was the decline coincidental, triggered instead to the onset of travel exhaustion or some other factor? The Health Physics Society’s webpage on security-screening safety concludes, “[B]ecause of its nonionizing properties, the magnetic field generated in a metal detector will not cause harm to persons even with routine and/or repeated scanning.” A post on the BabyCenter website states, “Anything that generates or uses electricity, such as power lines or household appliances, produces an electromagnetic field. At the low levels a metal detector emits, this exposure is considered safe for everyone, including pregnant women.”

I will never know for sure whether the metal detector provoked Martin’s symptoms that evening. But something happened around the time he passed through. That much I witnessed.

Incident Two: Precarious Home Library?

Some weeks ago a nice fellow from Healthy Dwellings came over and completed a “healthy home evaluation” for our apartment. He spent several hours taking meter readings, testing water, checking air quality, and so forth. The resulting report showed that we’re doing pretty well, in most aspects.

One exception was radio frequency (RF), those electromagnetic waves that send data wirelessly. Ideally, RF levels should hover below 10 mW/m2. The lowest reading in our home—in Martin’s bedroom, thank goodness for small favors—was 137 mW/m2. In our living room, the level was 540 mW/m2, and in the library, the level topped out at a whopping 3,600 mW/m2. Our home library is an alcove set within the rafters (we live on the top floor) with a large skylight absorbing all that New York City has to offer (windows are the most common entry point for external RF waves). Our home library, because it is farthest away from any other apartment, is also where we keep Martin’s drum set.

As averred, Martin’s behavior improved last week. One particularly unsymptomatic afternoon Samara (babysitter) picked Martin up from school and brought him home, where I was cooking. When they arrived I completed several HANDLE exercises with Martin, watched him play with Thomas trains, and discussed with Samara how calm Martin appeared, steady on his feet and content to play alone. Samara agreed.

Martin then declared his intent to play drums and headed upstairs to the library alcove. Samara followed him. I returned to the kitchen. By virtue of an open floor plan, the library is visible from our kitchen. That helps me keep an eye on Martin and, in this instance, let me observe that, within five minutes of his going upstairs, Martin transformed into a different kid: running back and forth, flailing his limbs, unfocused. I called for Martin and Samara to come back downstairs.

It was another metal-detector moment. What caused Martin’s behavior to change from “with it” to “restless and in his own world”? Part of me wants to blame the library and its RF hurricane—because RF levels, at least to some degree, are fixable. Part of me thinks that I’m blaming the RF levels because I just discovered they are high in the library, and I’m prone to grabbing hold of any factor I can blame when Martin tanks. All of me admits, “I dunno.”

Pinpointing

These incidents raise a few possibilities.

First, I may actually have pinpointed some factors that affect Martin more than others. Brain-scrambling magnetic fields and RF waves!

Second, I may have seen connections that, in reality, don’t exist, and I may therefore explore yet more dead-end routes, like refusing to let Martin through metal detectors or blocking RF waves.